Friday, September 27, 2013

A few short days from the October 1 marketplace openings, and uncertainty and confusion linger in discussions around healthcare and implementation of the Affordable Care Act (ACA). Policy experts, providers, and consumers alike speculate, and it seems there will be more questions than answers until we at last see how reforms play out across the country.

The HIV/AIDS community knows that health reform, both affectionately and derisively referred to as “Obamacare,” certainly benefits people living with HIV/AIDS (PLWHA) and those at risk; we absolutely need to spread the word far and wide. But let us also be sure to remember the existing tools in our arsenal that can maximize those benefits. One such tool, often detrimentally omitted from conversations about health care, is unequivocally an effective, cost-saving intervention – HOUSING.

Housing is Healthcare!, Housing is Prevention!, or Housing Saves Lives!, aren’t rallying cries that Housing Works advocates causally toss into articles and testimony or banners and protest signs simply out of habit after nearly 25 years of advocacy and activism. The health and cost-related benefits conferred by access to safe, affordable housing are well demonstrated by research, both for PLWHA and to prevent transmission among HIV-negative homeless populations.

Housing Works' Housing is Healthcare Rally

For marginalized communities – whether HIV-positive, living with mental illness or substance abuse issues, or others unstably housed – having housing means better holistic health. Even without the research this is common sense, right? Housing means having a place to store medications and healthy food, get a full night’s sleep, and often relief from the fear of violence. It means an address for job applications, avoiding hypothermia in the winter, and a safe space to engage with family, friends, and lovers. It means treatment adherence, safer sex, and everything taken for granted by many of us every day.

New York State, leading by example, is not taking housing for granted in its current efforts to improve the healthcare system. Governor Cuomo is proving to be a national leader in the effort to effectively utilize the Medicaid program and underscore that housing IS healthcare. New York’s Medicaid Redesign Team (MRT) was initiated in 2011, and early on an Affordable Housing work group was deemed critical and included in the process. Gov. Cuomo, thanks to MRT’s efforts, recently announced a $4.6 billion savings over the past year alone. From those savings, the Supportive Housing Initiative will be allocated $36.4 million in capital funds, $30.6 million in rental/service subsidies, and $24 million for critical new pilot programs – a total of $91 million.

New opportunities require new ways of thinking; innovation is necessary to address the complex and diverse health concerns of PLWHA, especially as the population ages. The MRT allocation for pilot housing programs begins to address this – one of several critical projects being the “Health Home HIV+ Rental Assistance Project.” Much to our collective chagrin, it is not uncommon for official policy to be somewhat disconnected from lived reality. Under current HIV/AIDS Services Administration regulations in New York City, instead of providing housing to prevent exacerbating illness, one must already have an AIDS diagnosis or advanced HIV-illness to even qualify for such services. This pilot project creates access to housing for HIV-positive individuals otherwise medically ineligible for existing programs, finally prioritizing true preventive care PLWHA.

Jason Helgerson, New York’s Medicaid Director, explained it plain and simple – that finally “[t]here is a growing national recognition that addressing the social determinants of health is critical for improving health while reducing health care costs. This is most evident in the matter of housing.” This recognition, coupled with financial commitment, is essential for homeless communities and PLWHA. States seeking to maximize Medicaid dollars – whether or not they opt for expansion – should consider adopting or (dare I say) expanding upon this model of redesign, reinvestment, and innovation. The historic opportunities created by ACA reforms present a crucial time to take full advantage of evidence-based interventions, like housing, to truly commit to realizing the end of AIDS.

Friday, September 13, 2013

Earlier this year on March 19th when the ADAP Advocacy Association and Community Access National Network (CANN) announced that they were co-hosting an HIV/HCV Co-Infection ADAP Summit, Bill Arnold said, "CANN has long been recognized for its commitment to promoting patient access to timely care and treatment, and we need to educate consumers, community partners, as well as congressional staff here in Washington, DC about the fastest growing public health epidemic since AIDS: Viral Hepatitis C infection. We have learned many valuable lessons from the HIV/AIDS advocacy community over the last three decades, and CANN will now apply those lessons to ensuring access to effective HCV treatments."

The Summit convened in Las Vegas, NV on April 25th-26th and various stakeholder groups participated in the conversation (only the federal government agencies were not represented because Sequestration restricted agency travel budgets). By all accounts the Summit achieved the objective laid out in Arnold's statement, but unfortunately there are some very sobering statistics behind the need for the event being held in the first place, among them:

About 25% of people infected with HIV in the U.S. are also infected with HCV.

About 80% of injection drug users (IDUs) with HIV infection also have HCV.

HIV/HCV co-infection more than triples the risk for liver disease, liver failure, and liver-related death from HCV.

Compared with other age groups, a greater proportion (about 1 in 33) of people aged 46–64 years are infected with HCV.

Chronic HCV is often "silent," and many people can have the infection for 20 to 30 years without having symptoms or feeling sick.

In the U.S., HCV is twice as prevalent among blacks as among whites.

New data suggest that sexual transmission of HCV between MSM living with HIV occurs more commonly than previously believed and that sexual transmission can occur undetected between HIV-infected MSM in the absence of injection drug use.[1]

Some public health experts predict that the HIV/AIDS epidemic of the 1980s will pale in comparison to what is likely to happen with the onslaught of new HCV infections. Fortunately, there is a cure for HCV infection.

Several pharmaceutical companies -- including AbbVie, Boehringer-Ingelheim, Bristol-Myers Squibb, Genentech, Gilead Sciences, GlaxoSmithKline, Janssen Therapeutics, Merck, and Vertex -- have numerous new HCV treatments on the market, or in the pipeline, which are much improved over the initial treatments that won approval by the U.S. Food & Drug Administration (FDA). The marvels of modern medicine means that many of these new treatments come with far fewer side effects, better resistance profiles, and in some cases, patients will be on the treatments for less time before achieving optimal results. But at what cost?

According to the Fair Pricing Coalition (FPC), FDA-approved HCV treatments have been extremely expensive, coupled with double digit price increases accompanying some of these drugs since 2011. The FPC has released statements on the cost of the new drugs. The debate over drug pricing will surely continue to ignite emotions once the newer treatments gain FDA approval, and at a much higher cost. In all fairness to the pharmaceutical companies, they have also expanded access...or plan to expand access...to their patient assistance and co-payment assistance programs.

The aforementioned discussion led to what amounted to be the most interesting idea accepted at the Summit: A Pharmaceutical Industry Access to Care Report Card. The "report card" idea was among the recommendations included in the HIV/HCV Co-Infection ADAP Summit Final Report, which was released last week and included both short-term and long-term recommendations.

The short-term recommendations included:

Identify national coalitions (i.e., Federal AIDS Policy Partnership, National ADAP Working Group, HCV Coalition for the Cure) and their respective partners, and develop strategic objectives to advance the treatment of HIV/HCV Co-Infection, as well as access to them.

Develop universal messaging campaign surrounding access to care under the AIDS Drug Assistance Programs, using “success stories” from co-infected patients. (Editor’s Note: Some of this is already being done by the Campaign to End AIDS).

Ensure that ACA Essential Health Benefits include benchmarks for treatment guidelines, as well as sufficient appeals process.

Establish emerging treatment guidelines using existing medical data and consumer experience. It is premature to evaluate “gold standard” for treatment because too many HCV treatments are in the development pipeline, including some already being evaluated by the Food & Drug Administration (FDA).

Develop “Fact Sheets” on existing plans for treatment for co-infected patients, including “navigator” information and resources.

Develop pharmaceutical industry “Report Card” to evaluate access to timely and appropriate care of people living with HIV/HCV Co-Infection; grading new should take into consideration drug pricing, patient assistance programs, drug rebates (if available), community education/participation initiatives, and accessibility of user-friendly product information (aside from what is legally required by the FDA).

Implement “Common Portal” for ADAP.

Evaluate adding a new Part under the Ryan White CARE Act, specifically addressing HIV/HCV Co-Infection modeling after the Minority AIDS Initiative.

Whereas the Summit's Final Report is not necessary endorsed by the HIV/HCV Co-Infection ADAP Summit’s sponsors, panelists or participating organizations, it does represent a significant step in ensuring that the effort to combat HCV infections learns from the ongoing struggle against HIV infections.